Patient Demographics/Information

I agree with previous…

I agree with previous commenters about this set being incomplete and out of step with a number of states which issue "X" birth certificates. This could make such individuals ineligible for a number of life-saving government programs, being unable to sign up without perjuring themselves. (see Princess Janae Place et al v. NY State OTDA et al, for more info: https://www.nyclu.org/en/cases/princess-janae-place-et-al-v-ny-state-office-temporary-and-disability-assistance-et-al).

Myself and 16 other trans people wrote recommendations for assigned gender at birth (AGAB) as an extension to the HL7 Gender Harmony Project's Recorded Sex or Gender because some governments are considered removal of gender markers from birth certificates and that may happen in the near future. Not preparing for such an eventuality will cause further problems down the road.

Therefore we suggested (https://doi.org/10.1093/jamia/ocab136):

"What is your assigned gender at birth, meaning the gender marker which appears on your original birth certificate? Choose one.

- Female ("F")

- Male ("M")

- X

- Unsure

- Prefer not to respond or disclose

- Assigned gender at birth not listed (please specify): ___________" (this is necessary because many countries issue other letters on birth certificates, such as "E" in India or "D" in Germany)"

Unknown would still be the nullflavor in this case.

Intersex is not included as an option because nowhere in the U.S. uses intersex as an AGAB. Intersex people are usually assigned male or female at birth. I suggest reading what intersex people have written themselves on data collection here: http://web.archive.org/web/20210412083828/https://interactadvocates.org/intersex-data-collection/.

Additional values in the value set

: Current birth sex representation values categorizes everything other than ‘Male’ and ‘Female’ into ‘Unknown’. It is important to disaggregate further to accurately represent birth sex categories other than the two mentioned above to evaluate and reflect the needs of the other genders.

The gender value set being proposed is as follows:

• Male
• Female
• Intersex*
• X*
• Not listed, please describe*
• Unknown 

*=New values being proposed

NCPDP Comment

NCPDP uses AdministrativeGender as the mandatory gender value.

Optional field, SexAssignedAtBirth, is used to capture birth sex. The SexAssignedAtBirth field will be available in the next NCPDP SCRIPT standard currently under ballot. The SexAssignedAtBirth field will include the values of (M)ale, (F)emale, (U)nknown and (I)ntersex.

Therefore, NCPDP recommends adding the value of Intersex (Definition: An individual born with any of several variations in sex characteristics, including chromosomes, gonads, sex hormones or genitals that do not fit the typical definitions of male or female).

Please align with the HL7 Gender Harmony logical model

Gender Harmony ballot is currently being reconciled and will be published in the next 4-6 months. This model notes that while useful at times, Birth Sex should not be considered a permanent, unequivocal characterization of any clinical physiologic sex observation. Some locals align this with the sex value entered on a birth certificate, which can be modified at a later date based on either a better understanding of the current patient physiology, or as a proxy for current patient gender identity. As such, we would recommend that Birth Sex be considered simply a Recoded Sex value that must be interpreted based on the context of recording and use. A better approach would be to support the Sex For Clinical Use (SFCU) approach described in the GH model.